DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them.

Monday, July 23, 2012

Not for wimps.

I almost always participate in the NARCOMS registry surveys. They are long, but I hope that the information they gather helps decide the course of research in some way. I commented on the last one:

I'm unsure since they all seem to have the same symptoms, but my recent health issues could be related to MS, Graves disease, hyperthryoidism (previously hypo), or multiple food allergies, among other things. I'm curious about the autoimmune connection that I'm seeing in the allergy (particularly Celiac) community, people having autoimmune diseases like MS too.

And I got a response back!

There is a modest increased risk of other autoimmune diseases among MS patients (particularly thyroid, as in your case), but not as much as in other autoimmune diseases such as lupus or Type I diabetes.

Okay, it's kinda weak, but at least they tried.

Sunday, July 22, 2012

Living Without

Since we were going to celebrate a birthday for a 7 year old at a relative's house. I know that they will have food but I won't be able to eat much, but also that the Celiac relative would be bringing a dessert for me to share with her. So I ate lunch right before we headed over. After some swimming, we had some cake from the Gluten Free Creations bakery. Sweet. Really, it seemed very sugary. But it was good as a treat, with another treat--coffee with Kahlua.

She sent me home with the rest of the cake and I'm certain I will eat a piece every day until it's gone so it doesn't go to waste! She also brought me some chocolate chip cookies which were very good, very much like a traditional cookie but maybe a little more, not really crumbly but kind of that type of texture.

The Celiac relative brought me her first issue of Living Without magazine. She wanted to show me an ad for Alcat testing. I'm not sure that it's the answer but it seems to be associated with a rotation diet. She also informed me that she was going to get a gift subscription for me for my birthday!

In this issue, I liked the one page Living Without pantry Substitution Solutions. Although it specifically says that substituting for more than two eggs may change the integrity of a recipe, the recipe for the blueberry pancake makeover lists the flax gel substitute for the 3 eggs. I might try it to see how it works. But I hate to waste my time and money if it doesn't come out.

There are several other recipes I could make as well. I find it interesting that even in a magazine like this, for people with allergies, there are so many recipes I can't make or have to consider what substitutions I will have to make. At the same time, it's good to see a few things for me. And I like the book recommendations. I have one of the books I borrowed from the library and it did have some good ideas, and 2 more of the books are available at my library and look like they may have some good recipes for me too.

This relative and I go to the same endocrinologist, and we discussed the lack of diet and nutrition advice we have received, how they really rely on medicine and don't seem to be looking for any cutting edge or alternative treatment to thyroid disease. For example, she is eating seaweed for her Hashimotos but it is not recommended for people with Graves. She (as I am!) was really confused by the fact that I've gone back to Hashimotos after just being diagnosed with Graves a few months ago.

Frankly, I'm kind of tired of doing all this research and trying to figure out what I should or should not be doing. I'm currently considering cutting nightshades from my diet (she has not done that, but there was an article about it) but am so restricted that I'm thinking about doing a "priority list" so that I can be the most restrictive at home but not as much when I'm out. Otherwise, I fear that I will really go insane. Insaner.

Saturday, July 21, 2012


I knew I was getting sick by the time I left work yesterday, so I stopped at the grocery store for some supplies. I got some Vitamin C and Zinc, both of which I generally don't take since they boost the immune system, and a couple of bottles of orange juice. I originally planned to go to get some yogurt (coconut milk) so I picked that up and a few other things and headed home.

I took a bottle of OJ and the 4 serving size of vanilla yogurt for our trip up north for dog training in the woods. While I was eating my entire yogurt with some granola added, someone asked me about the calories. I had to look and do some math since I rarely consider the calories now. I mean, I have a general idea of calories, but I'm not counting them--I just try to eat more "nutritional" calories than empty calories.

There was about 350 calories in the yogurt, so I thought that was pretty reasonable since I wouldn't be eating a sandwich like most people brought for their lunches. During the day, I had a Clif Organics Kit bar and a Larabar Uber, which I thought was a little overly sweet, just like the regular Larabar with those flavors (apple pie and cherry pie). I also had an apple with Justin's Maple Almond Butter.

After the training had ended, we were hanging out and I mentioned to a couple who had their dogs running around that they should watch them around Teka. My husband went to change his clothes, and a short time later, I heard the yelling. He later explained that Teka was fine with the male dog who came over and was nose to nose with her, but the female dog came over and growled and Teka snapped at her. So maybe, just maybe, we will be able to work with her, and get a male dog, probably from our local breed rescue from a foster who knows us and our situation, but not get a puppy, for our next dog.

We usually go to Bunhuggers on our way out of Flagstaff, and I was pretty sure I wouldn't be able to eat there, but I encouraged my husband to go anyway. Fortunately, they grill the burgers and chicken without any oil or seasonings, so I asked for a burger with no bun.

They have a salad bar type set up for the burger toppings, which includes shredded lettuce, tomatoes, pickles and relish, onions, and an assortment of sauces. I was thrilled that they gave me a stack of lettuce leaves under my burger, so I was able to make a lettuce wrap. I'm going to miss their fried zucchini, mushrooms and zucchini, with ranch, but the burger--protein style--was good.

Thursday, July 19, 2012

Dr. M

I saw the doctor today for my adjustments. That is all.

Wednesday, July 18, 2012

No boys. Except the doctor.

I haven't been to a MS support group or event in a long time, it seems. I was surprised to get several notications about different events planned very close together, but I forwarded the information to a newly diagnosed friend of my coworker. When she decided to go to the "No Boys Allowed" program, I agreed to meet her, although neither of us was excited about the topic. The presentation was urology.

The presentation was about bladder, and to a smaller degree, bowel issues related to MS. A couple of things  caught my interest. One was a diagram of a nerve running from the big toe through the leg to the sacrum area; the doctor was showing a point in the ankle that they use for acupuncture to impact the bladder/bowel function affected in the sacrum area. Hmmm, maybe there's something interesting here. Or maybe not. But I have issues with my leg when I have issues with my, ahem, digestion.

Part of their (non-surgical) treatment protocol includes Pilates. He gave out handouts about doing Kegel exercises, and says that they recommend Pilates. It was unclear if he was saying they are related, but I'm seriously considering some Pilates to prevent future bladder issues.

I was able to talk to the new girl afterward; she mentioned that she finds herself, not usually a curser, cursing more since her diagnosis. I fucking curse way more when I'm talking about my health than just about anything, except maybe how ridiculous people are! She seemed to be looking for information on diet and alternatives medicine to complement the conventional medicine being recommended by her doctor. I support that mission! She had actually already done a Paleo challenge with her fiancee prior to diagnosis, so I think she may be in a good place to pursue a very healthy lifestyle.

I took my monthly monitoring survey too. No changes!

Saturday, July 14, 2012

Nourish123 Gluten-free foodie tour

It's Saturday so I have time to cook breakfast but not too much patience since I slept in and I'm hungry. I made stovetop cream of buckwheat cereal with some local honey and topped with some leftover pulled pork mixed with pineapple habanero barbecue sauce.

Breakfast of champions. Or me.
Although I put out the word that I wanted to go, I had no takers for this month's gluten-free foodie tour. Ken from Rock a Healthy Lifestyle managed to set up this event at one of my favorite safe places to eat, Nourish, so I was going, even if I had to go alone. I saw that it was almost sold out and bought my ticket. As my Saturday took it's course, I got nervous about making it in time.

A woman I've known for about ten years emailed me and my DH Mick about her son's move and his need to get rid of some outdoor dog kennels. After some calls and emails, we determined that we wanted them and would drive out to get them. Then we realized that they were too long (12 foot sides and roof!) to fit in a 7 foot pickup truck bed. So we scrambled to get a trailer we could hook up to the Pathfinder. We ended up renting a 5 x 14 box trailer and headed toward the dark skies east of us. Somehow, we managed to avoid the rain, loaded up the kennels, and made it home, just in time for me to get ready to head back out to almost the same area of town I had just visited.

I only knew a few people at the event--Ken, Kirsten the owner, Dan the chef, and Celiacandthebeast and her non-gluten-free-boyfriend. She got better photos than me, including (in order, but not all inclusive) the watermelon refresher which included chia seeds--good but textural, the biodynamic white wine--"better" than organic, the "taco" bar which included a walnut "meat" and butter lettuce--a huge hit with everyone, and the berry soup with cashew kreme--like dessert before dinner.

But I got a few photos of my own.

Yes, it's all vegan. The three bean chili is perfectly spicy, and not cooked until it's warmed for serving.
The entertainment at my table sponsored by Crispin Cider.
I ATE DESSERT: Innocent Indulgence lemon, mocha, chocolate "cheesecake"
Me and Kirsten. I won a PopChips basket. I wish they didn't use yeast in all the flavored chips.
I ate, I drank, I talked, I listened. I ate a lot. I overheard the chef tell someone he used nutritional yeast to make the cashew creme. I really, really seriously hope that's not true or I didn't eat enough to make me sick or that nutritional yeast doesn't make me sick, cause really, who knows what a brewers yeast and bakers yeast allergy really fucking excludes from a diet besides the obvious. (The gal at my table thought I should try the cider until she read the bottle and it described the taste as "yeasty.") I didn't eat the "cannelloni" which was super cute thin slices of zucchini wrapped around a nutritional yeast "cheese" filling. Anyway, I'm still a damn freak, even among freaks at the table.

Wednesday, July 11, 2012

Bouncing thyroid

Dr. H had my blood taken to be tested when I was in last Thursday. On Monday, she left a message for me that my thryoid levels are low. Of course, I got it on Tuesday since I'm so awesome at checking my phone which I had put on silent mode for a meeting and then forgot about. In the meantime, I faxed her about 20 pages she had requested including my previous thyroid lab results and MRI results.

She indicated that I needed to get in to see my endocrinologist right away about my thyroid numbers bouncing around, so I called to schedule it. I wanted to make sure I got the test results so they don't automatically run additional bloodwork, although they still might. She said the liver and kidneys are fine and emailed the results. Here are the "off" numbers:

TSH was 16.430; reference range is 0.450-4.50 uIU/mL so it's high.
Triiodothyronine, Free, Serum was 1.9 pg/ML; reference range is 2.0-4.4, so it's low.
T4, Free (Direct) was 0.46 ng/dL; reference range is 0.82-1.77 so it's low.
Thyroid antibodies - Thyroid Peroxidase (TPO) Ab was 144 IU/mL; reference range is 1-34 so it's high.

I don't really know what any of this means but my numbers bounce around and have been all over the place for at least a year; I have high and low numbers at the same time. Dr. H seems convinced that my issues with feeling terrible are thyroid related and the gastrointestinal issues are related to the thyroid issues rather than food issues. She seems hopeful but I don't understand how I can treat my thyroid differently to not feel this way.

Friday, July 6, 2012


One of my nieces likes to ask me "hru?" I couldn't respond today. I just felt too negative. All I could think to say was "shitty." Or "really fucking shitty."

I felt crappy when I woke up, but it wasn't so bad. So I worked through it, did some gardening for a couple hours since my husband's helpers were here to help him with tearing down the farm. The corn was dead so it came out; the sunflowers were cut off to dry out in the garage; the watermelons were cut and brought in; it appears to be too hot for everything now. I harvested some beets, eggplant and basil. I worked on digging out some weeds, pulling out some overgrown or dead stuff, and cutting down the parsley that came back for the third time (so it's not good parsley) and the swiss chard.

But I felt bloated, gassy, headachy, just not good. I tried to keep hydrated, and stopped for breakfast around 10. I had leftover taco meat with Kettle crinkle chips and guacamole. I had some orange gatorade and a lot of water.

I progressively felt worse.

I tried to cover it up since the helpers were still here. When they left, I had to lay down and I watched TV. I felt more bloated and gassy later in the day. I had some chicken nuggets and tater tots seasoned with seasoned salt, with ketchup for lunch, followed by some green and red grapes and two Enjoy Life Crunchy chocolate cookies, which were seriously awesome. I thought I should eat something healthier but I just didn't feel good at all and wanted "comfort" food.

It seemed like I felt even more bloated as the evening progressed. I kept drinking water and going to the bathroom. The pork shoulder was finally done so we had pulled pork for dinner. I had mine with some sauce and a few chips. I also had some cranberry juice. I had a couple more cookies. I told Mick about the lightheadedness. I'm not even sure that's the right word but I feel like my head didn't keep up when I moved and it's swimming, heavy, going to explode, or something.

I can't remember when this shitty cycle started but this has to be at least the third day and I'm so done. I think Dr. H was wrong and I'm seriously considering getting a different type of allergy test. My SIL is looking into it an allergy test, Alcat, she read about in Living Well. Someday, I'd like to live well.

Thursday, July 5, 2012


I woke up feeling crappy. My head hurt and I just generally felt blechy. I felt like I was moving in slow motion, but I got ready and headed out. My husband had the day off and I was going to the Naturopathic College for two appointments before going to work. I went to the bathroom, just a little, when I got there and felt just a tiny bit better briefly.

I saw Dr. M first for my adjustment. There were two students I had met at previous appointments. My headache was pretty bad by then so he was talking to the students about diagnosing headaches. It sounded like he felt it was a hypertension headache although they did talk about another type that I can't recall now.

They also talked about the relationship between the upper and lower back as he was adjusting near the top to adjust the mid-lower back. I felt better when he was done, but I didn't feel good. I had started crying as soon as the students were asking about how I felt and had pretty much cried the whole time I was there. Dr. M picked up a magazine that was left on the counter and pointed at the title and said that was me. Lucky. Really? How the hell am *I* lucky? I let it go, but I really wanted to disagree. Loudly and vehemently. But I felt too crappy.

I had a new student for my visit with Dr. H. I told her that I was feeling bad and of course, I was crying in no time. The other doctor who works with Dr. H (but I always forget her name) stopped in and seemed a little, I want to say freaked out, but probably just concerned. She sent the student to find Dr. H, who came in very quickly; it seemed she thought it was an emergency. I must have really been freaking out or at least freaking everyone else out. They gave me some Rescue Remedy--stuff I have at home for my Teka dog's anxiety.

The other doctor left while I was talking to Dr. H who had the student discuss my diet and medications. She seems to think that it's not related to my food allergies (although I'm bloated and having digestive issues) and she was very curious about the Celiac care kit. I have to admit, I didn't feel well the whole time I was on it, so she suggested I might need to stop taking all supplements.

She hadn't received the most recent lab reports from the endocrinologist, so I let her know that I have a copy and could fax it. She also requested the MRI report, and the details of the Celiac care kit. She wanted me to have my blood drawn before leaving so she could see what was going on.

She also had the student give me a food diary to feel out. She wanted the student to discuss my diet with me, including why I was excluding each item--um, basically cause I don't think I feel well after eating those things. I felt like she was saying that I am putting things on my list that don't have to be there. The student, after hearing that I stopped eating wheat in August of last year, gave me some ridiculous comment about cutting my diet so drastically that it wasn't sustainable. W. T. F. people? If I'm allergic or even sensitive to something, why would I keep eating it? Oh, even better, Dr. H added seafood to my "no" list because of iodine.

She seems pretty certain that my symptoms are symptoms of Graves disease and/or of the medication I'm taking for Graves. Unfortunately, I can't really agree with that assessment since I've been feeling like this for years. It had gotten a lot better for a while but still, I know that it was going on before the Graves. I felt too crappy to argue. I just wanted to feel better.

When they were all out of the room, I laid down. My head just about exploded when I laid down. I closed my eyes and saw stars. Like being in the Starship Enterprise traveling through space--moving stars. Unbelievable pain, head and low, low back.

They came back in and I told them how bad I was feeling. They wanted me to stay there and relax. The other doctor gave me some (I think) magnesium homeopathic tablets. Dr. H told me to go home rather than going to work. Eventually I was able to get back up and they sent me to get my blood drawn. When we were waiting for the lady at the desk to process my paperwork, I felt sick to my stomach. Oh, hell--I haven't thrown up from being in pain in a long time. Well, I made it without getting sick, got my blood drawn, and headed to the car where I adjusted my mirror up.

I went home and called in sick to work. That made me feel a little sick too. I have a lot of stuff to get done and I'm going home instead. Really? *sigh* I had some gluten-free chicken nuggets with barbecue sauce and tator tots with ketchup. Then I slept for four hours. I still have a headache.

Monday, July 2, 2012

crying and other thoughts--or lack of

I was having some residual effects of my adventures eating this morning, and was not feeling so great, having some back pain, but it was coming and going. I was trying to ignore it as much as possible rather than dwell on it. It's so tiring to think about. And my head hurts.

A younger lady came into my office and wanted to know if she could ask me a personal question. She looked like she had been crying, so I told her to close the door. She sat and told me her 23 year old friend was just diagnosed with MS. She is having vision issues, was diagnosed through spinal tap, and has had a steroid treatment.

As soon as my friend started crying, I was in tears. How do people do that to me!? I hugged her and reassured her and answered her questions. I gave her my email address to pass on to her friend, but I know that people have a hard time reaching out for this type of thing so I don't know if she'll contact me.

I wonder if anything would be different if I had been diagnosed earlier. Or later. Is anything I do, or anything I've done, making any difference in the course of my disease?

I'm glad I "came out" about having MS. I sometimes wonder if that was such a great idea--there are a lot of misunderstandings, misconceptions, stereotypes. But I have made friends I would have never met, and have been able to "be there" for others who are dealing with it, even indirectly, in their life.

My lunch date (on of my MS peeps!) cancelled on me and I had not brought lunch. Given my experiences last few days, I was not excited by the prospect of going out to find lunch. I thought how easy it used to be to just go out and grab a sandwich and/or a salad. Now it's a major undertaking. The questions I have to ask. The checking with the kitchen they have to do. The chance that I won't be able to eat after going through all that. The chance that I'll eat and then feel like crap.

I used to go to Bertha's for my quick lunch, so I decided to call to see what their current soups are. Today is tomato, and they make it there, no broth (yeast), no gluten, no dairy. So I went for soup and mixed greens salad with balsamic vinaigrette. I also had passion fruit ice tea and Dirty brand sweet potato chips (g/f). They had to bring me a second bowl of soup because they forgot and put the pesto garnish in the bowl.

I went next door to Smarty Pants to see if I had any credit and look at a small part of their selection. I chose size 8 dresses and medium and large bikini swimsuits. Some of the dresses were too big but I got two and then got two bikinis and an ASU beanie hat and a pink belt that is exactly what I thought I needed with my black and white dress that I've worn with pink shoes. I did not ask about my credit. I didn't even think about it until hours later.

Unless I'm reacting to something else, I'm still having some reactions to whatever has been causing me issues the last couple days. I can't believe how many times I've been in the bathroom. But I'm finally feeling better-ish when I go home.

I'm trying to turn over my garden, in part, so I pulled out all my swiss chard, checked on my bell peppers that seem to be doing really well finally, see that I have a lot of huge eggplants that don't look like they are doing so well--maybe it's just too hot--it's such a waste, and harvested some basil from one of my plants. I need to get the other and the chives tomorrow if I can get to it. I haven't even checked the second garden but, although it's pretty neglected, I'm pretty sure there's a little harvest in there too.

Since my system has been a little wonky the past few days, I decided to go for something that I don't think makes me sick--chicken sausage, garbanzo beans, sweet potatoes, g/f pasta. I was out of marinara, so I used a can of pizza sauce and a can of tomato sauce, and added some seasoning and fresh basil. It turned out pretty well. Mick went back for seconds!

I decided to have a little coconut milk ice cream and grabbed the first one I saw in the freezer. It was chocolate hazelnut. I tried to stop eating it a couple of times but ended up eating the whole frickin pint. It was very good. Oh, so good. And then I felt overstuffed. And uncomfortable. And I went to bed and had trouble going to sleep because I was uncomfortable. Why do I do this to myself? WTH is wrong with me!?

Sunday, July 1, 2012

Guessing game

I felt pretty terrible tonight. Mick thought it was lunch but I'm skeptical. I was already feeling gassy and bloated, and frankly, having very stinky toots before we made it to lunch at Royal Jasmine Thai. The lady there was very reassuring that there was no soy and no gluten in the curry I got. I took some home for a snack later. When I really started feeling terribly, I went back mentally. WTF did I eat this time? Was it a delayed reaction to the terribleness of Friday's adventures eating out? Or was it something more to do with my activity level, my back maybe, since I've been doing a lot of gardening and cleaning?
After thinking about it for a while, I'm wondering if that tiny blip on my allergy test for shrimp is going to cause me trouble. I don't eat it very often, so I guess I could easily test that theory if I can feel well enough for long enough to test any theory.
Unfortunately, this means that I can't measure if today's Thai food made me sick or not.